Obamacare and the disability community

Medicaid expansion and the disabled

Sam: We’ll have to see. It’s promising, for sure. If the Medicaid expansion were fully implemented – if all states would take up the Medicaid expansion – that will help a lot. A lot of folks who have disabilities but don’t qualify for Medicaid because they don’t qualify for SSI or SSDI right now. They still are poor enough that the Medicaid expansion is something that would really help them. In the states that have taken it up, that’s going to make a big difference.

Certainly the availability of insurance on exchanges is going to make a big difference, the getting rid of pre-existing condition exclusions and caps. Lifetime caps for treatments are a huge problem for people with a lot of different kinds of disabilities that require ongoing treatments. These are folks who can’t get jobs that provide health insurance, through the group market that doesn’t have caps. They end up either trying to find these very expensive policies which they can’t afford, or just not having insurance. That puts them on public programs.

That’s going to make a difference for people with disabilities, and ought to make a difference in terms of employment of people with disabilities. It doesn’t solve the problems like transportation, assistive technology, personal assistance services, that are also essential to getting people with lots of different kinds of disabilities into the workforce. But it does relieve what’s probably the biggest disincentive to working for a large number of people, which is that if they go into the workforce, they won’t get the health insurance that their disabilities require them to get, to pay for the services they need.

Harold: I’m nervous about the exchanges. My wife and I take care of her brother, who has Fragile X Syndrome and is intellectually disabled. He’s been on Medicare and Medicaid continually, which we’re very grateful for … We hear a lot about how Medicaid has so many problems. Certainly we’ve experienced some of those problems. If someone said to me, “Would you be willing to take him off of Medicaid, and put him into a health insurance exchange?” I would be so incredibly nervous about that, because the reality is that Medicaid has provided for his needs, and has basically covered what he’s needed.

It seems to me that, for people with complicated disabilities, or complicated medical problems, the exchange is an unknown animal right now. Of course, the removal of the lifetime cap would be great, because he would have hit the lifetime cap many years ago. Last summer he had three hospitalizations, and that’s not so unusual. How confident are you that the moving parts are going to move the way they’re supposed to move?

Sam: That’s the real question, and we’ll just have to see. I’m hopeful that the moving parts will move as they’re supposed to move. The Medicaid expansion issue is a big issue. The biggest problem is you have a number of legislators – not even governors so much, but legislators in a number of states – who are really willing to leave not just a lot of federal money, an almost completely federally funded program, on the table. This is something that would help their citizens who are of limited means, and would also probably be very beneficial to a number of the hospitals in their states, that end up seeing people in emergency rooms who can’t end up paying.

It’s surprising that states are doing that. I think at the end of the day, folks will make the sensible decision, in terms of dollars and cents, but also the right decision in terms of what people need, and expand Medicaid everywhere. We’re seeing this transition period, where lots of people are going to be left in the cold. Robert Pear had a story in the New York Times today about precisely this, the states that aren’t taking up the Medicaid expansion. That’s the biggest concern …

I’m sure there will be administrative glitches and things that need to be worked out. If the political process in Washington were more functional, I would have more confidence that those things could be worked out more easily, but in the end those will be worked out.

Helping governors say “yes” to Medicaid

Harold: It seems to me that President Obama and Republicans in the House, they basically have no common interests … Republican governors and the President have some real common interests, because these governors are responsible for the health needs of hundreds of thousands, or millions of people. They need to run stuff. They have hospitals that they want to help. They have interest groups that very much want them to expand Medicaid.

They need a dignified path to do that, because of course they’ve spent the last three years claiming that Obamacare is evil incarnate, and so on. The President needs a dignified path to cooperate with them, too, because these are his political adversaries. They’ve been trying to get Obamacare overturned in the Supreme Court. Yet, they have a lot of common interests.

If I’m advising President Obama, I basically say, “Find a way to work with these Republican governors. Go to war with Paul Ryan. But don’t go to war with Rick Scott, because he needs to extract something from you so that he can go to his legislators and say, “I was totally against Obamacare, but now that he’s letting me do X, it’s not Obamacare anymore …”

There are hundreds of thousands of needy people who would benefit if these politicians can find a dignified compromise. Maybe we can’t do that until the President leaves office. Maybe some of these states are going to come in in 2018, when they can go and sit down with a Republican president, or another Democrat when at least it’s not the hated Obama anymore. But there are a lot of people who can’t wait that long. I don’t even know what a person in Texas is going to do over the next several years.

As you mention, many governors are actually quite happy to expand Medicaid, but their legislatures are not going to go along with it, as we’re seeing in Arizona and in several other states. These deeply conservative legislatures are going to fight this, and they’re not listening to the state hospital association, or whoever it might be. One would have hoped that interest group politics would trump ideological and partisan politics, but so far it hasn’t, or at least it hasn’t sufficiently overcome it.

What are the disability advocates doing in the red states? You’re involved with helping some of the groups that do advocacy work in this area. Are they active in that?

What disability advocates are doing in ‘red states’

Sam: Yes, they’ve been quite active, trying to push the Medicaid expansion. From the perspective of the organized disability community from the beginning, one of the aspects of the Affordable Care Act that people saw as among the most important. There’s a whole series of provisions that are about community-based services that are also really important, but the Medicaid expansion people focused on from the beginning …

In many states, the disability community is very organized. They really are putting pressure on. It’s really interesting because a number of quite conservative governors have said, “We really do need to expand Medicaid. It’s a good deal, financially. It’s the right thing to do, and it makes sense.” Yet you have a number of very conservative state legislatures that are blocking it in places like Arizona, Florida, and Michigan.

In some ways, everybody’s trying to make sense of what to do with such ideological state legislatures, just like in the House in Washington. Again, the standard interest group politics aren’t working. Maybe a number of the folks in the majority of the House in D.C. and in the state legislatures will say, “That’s exactly what we were sent there to do, to blow up interest group politics,” but you have real people who have very serious needs who are getting left behind as a result.

Next: 6 of 7 – The lost opportunity of the CLASS Act